Discovering your child has Cystic Fibrosis

Jessica (left) and Julia Calper, Swinford, who both suffer from Cystic Fibrosis.

Discovering your child has Cystic Fibrosis


The mother of two young children with Cystic Fibrosis (CF), Tina Tuohy, from Swinford, talked to Mayo News journalist, Áine Ryan, last week about the heartbreak of discovering her two daughters, Jessica (8) and Julia (10) suffered from the debilitating condition.

FROM the time Jessica was about 18 months she had a bad cough. She was fine as a baby and my husband Patrick (Calper) and I never realised what was ahead. Cystic Fibrosis never even entered our heads as we kept taking her to the doctor.
Then my neighbour – Maud Begley, she’s just a godsend ­­– was away on holidays for two weeks and when she came back she said: “Jessica doesn’t look right”. So we took her back to the doctor and he wanted to give her more steroids but we said no. From 18 months up until she was three years of age they thought she had childhood asthma.
But you know when you’re a mother, you have an instinct and I knew it was more than that. She wasn’t growing, there were dark circles under her eyes, and her stools smelled really bad because when you have CF you burn all the fat out of your body.
So we asked our GP to refer us to a specialist, thinking she might need a nebuliser.
On August 11, 2007, Jessica was diagnosed with CF. And, then, because we knew that her older sister, Julia, could be a carrier of the gene, they did the sweat (chloride) test and Julia, aged 7, was also diagnosed with CF. You don’t have to be a cougher to have CF. Her’s was more in the bowel.
Have you ever had anyone close to you dying? Well I lost my father about 13 years ago, and when we got the diagnosis for Julia, it was just like she had died.
It gutted us. I remember Pat came home from work in Galway that night, we weren’t able to talk to each other. It was so surreal. One child with CF was bad. A second was cruel.
I don’t think people realise how ill they can be. They don’t know it is a terminal disease. They don’t look physically ill often, all the damage is done internally. If they were in wheelchairs people would notice.
By the time they’ve gone to school every morning they have done so much work. I’ll have done 40 to 60 minutes of physio with each of them. They actually have two rounds of physio each day at home, either done by Pat or myself.
I have to say the staff in Mayo General Hospital have been great, particularly all the physio staff. Lorna and Marie are their two CF nurses and they are just outstanding.
We really need to get the message out there and explain the urgent need for a CF unit in Castlebar. We, as parents, are the only advocates for our children.
I’m a mum and one day I may no longer be a mum. Mothers do not want their children to die before them, that’s why we must get this unit built. I’m not prepared to let this campaign fail.

Cystic Fibrosis campaign in Mayo
PEOPLE affected by Cystic Fibrosis have been campaigning for a specialised unit to be built at Mayo General Hospital, Castlebar. Planning permission has already been granted and tenders are currently being sought. The project will cost in the region of €1 million. The majority of the funding is being raised through voluntary donations by the public through fundraising ventures by the Mayo CF branch.
The proceeds of The Mayo News Club Stars 2010 will go towards the Mayo Branch of The Cystic Fibrosis Association of Ireland.